Wednesday, June 25, 2008

As so many of you know, fundraising, awareness, and research are critical for improving patient outcomes and quality of life. For rare diseases that don't get the face time and air time more common disease receive, this is especially true, and disease organizations are often our lifeline. So, I was pleased to get an e-mail last night informing me that GoodSearch named the PCD Foundation the "Charity of the Day" for today, Wednesday, June 25, 2008. Rather than forward the e-mail, I've included text from the PCDF press release below:

"GoodSearch.com and GoodShop.com are convenient ways for the PCD community to participate in fundraising for the foundation with no direct out-of-pocket expense. Goodsearch.com is a search engine (powered by Yahoo.com) that pays a penny per click to the designated charity. Goodshop.com is an online shopping service that can be accessed on the GoodSearch.com homepage that allows buyers to purchase from a wide selection of popular vendors with a portion of the sale going to the PCDF. The buyer does not pay any more than if they were to shop directly from the merchant.* Together, GoodSearch.com and GoodShop.com are powerful and convenient revenue-generating options for non-profits of all size. For small non-profits, like the PCDF, they are an essential part of our revenue stream...

*You can shop at hundreds of great stores. Amazon, Best Buy, Macys and many others have teamed up with GoodShop and every time you place an order, you'll be supporting the PCDF!"

Here's an idea--if you're heading to Amazon to buy Life Disrupted, do it today through GoodSearch.com and help a wonderful cause. As a PCD patient myself, I can't say enough how important the community-building, education, and research efforts the PCDF spearheads are.

(And no, I didn't plan that shameless plug. The timing was just that good!)

PS--Tonight at 8:30 pm EST I'll be a guest on syndicated health columnist Judy Foreman's Health Now, an Internet radio show on HealthTalk . If you're free, tune in and listen, and click on the link to register and ask a question.

Tuesday, June 24, 2008

So today is the official publication date for my book, which is pretty exciting. I’ve seen photographic evidence of Life Disrupted officially on bookshelves, and I’m looking forward to walking into a store and seeing it with my own eyes.

Given its content, I find it somewhat amusing and fitting that if I don’t make it to a store tonight it is because I am sidelined with a freak viral infection of the lymph nodes in my abdomen. I mean, really, I couldn’t have scripted that life disruption better if I’d tried. (And oh yes, I did just make that terrible pun, but it’s my first and last offense on that front, I promise).

Anyway, while my mind is very much on writing these days, I couldn’t help but linger over this post by Felicia Sullivan, a terrific writer and supporter of writers who has an amazing memoir out right now. In this post she’s writing a review of Petite Anglaise, but what resonates most with me are her thoughts on blogging and its function in our lives as writers:

“This book is timely, however, when we’re all discussing “oversharing” and how our online “personas” affect our lives offline. One’s life should be lived not be crafted as a series of anecdotes fit for a blog post, so admittedly I came to this book with pre-conceived views on what parts of one’s life should be kept sacred.”

I couldn’t agree more. Of course life events are where writers and bloggers get their inspiration and everyone approaches how they blog differently, but Sullivan’s position that life shouldn’t be lived to serve as writing fodder is right on the mark. And I can’t help but feel that for people writing about disease/medicine, that rings especially true.

How do we sift through the symptoms and mishaps and complications and come up with something worth sharing (that isn’t over-sharing?) I’m curious what those of you in the trenches of medblogging have to say about that, because again that line is not only blurry but it varies greatly depending on writing style and approach. I don’t ever want my conditions to become why I write—after all, who wants to hear daily that it’s hard to breathe? That isn’t news or newsworthy in my world; as I’ve said before, it’s merely an occupational hazard of being me. It’s a thought trapped in a vacuum, when what I want is to open things up a bit.

But more than that, I find myself thinking about those parts of our lives we keep sacred and off-line, something even more present in light of the fact that it’s publication day for The Book. Obviously details of my personal life make up a lot of the book, as do personal details of several other patients. In a way, I faced the same questions and decisions in writing the book that I face when I blog—is there an added value to bringing in a particular story or anecdote? Does it advance or complicate an idea that’s important enough to warrant a reader’s time and attention?

And more universally, how do we know what stories are ours to tell and which aren’t? Anyone who writes nonfiction or blogs faces that question. Just because someone is or was in our lives, does that mean it’s fair game to include their details and their lives in our stories, especially if a medical situation is involved? Yet at the same time, our lives are so linked to the people in them that there’s no way our stories don’t involve them.

Personally, I err on the conservative side. I rarely use names on my blog unless it’s a public figure, and it isn’t, I just use first names or the ubiquitous “my friend” or “a loved one.” I wonder if that takes away from the human interest side of the story, but I’d rather take that risk. I don’t think there’s one ultimate solution to this question of whose story is it to tell, and it’s definitely not a problem unique to blogging—it’s just more exaggerated by the immediacy of blogging.

Anyway, before you rush out to buy a copy of my book (you are going to get a copy, right?), here are some links that are very apropos to this discussion on storytelling:

Check out this week’s edition of Grand Rounds over at Shrink Rap. Then, head to ChronicBabe where my friend (and a patient whose story is in my book!) Jenni Prokopy is having an essay contest to celebrate ChronicBabe’s Third Anniversary.

The most exhilarating part of the evening was learning about the innovative research and treatments these doctors are working on, and the atmosphere of collaboration and care for the patient that guides it. Whether it was discussing yoga and dance therapy for Parkinson’s patients, hearing patients talk about stroke rehabilitation, or learning how noninvasive techniques can help patients with a variety of conditions, it was impossible not to feel the energy and potential gathered in that room.

You don’t need to be a neurology patient or even the friend or family member of one to appreciate these types of advancements. In fact, the idea that if given the appropriate time, resources, and environment researchers can get closer to developing more refined, targeted, and effective innovations for diseases is one that stretches across many disciplines.

By pure coincidence, I also stumbled across this Slate article, “Old Drugs, New Tricks” this week. Writer Darshak Sanghavi points out that in some of the major fields of medicine—like pediatric oncology, or cardiovascular disease—some of the most significant strides in increasing patient survival rates came from refining existing older drug therapies, rather than aggressively hyped new medications. Of course he points out cases where brand new drugs have made enormous (and unexpected) gains for patients, but his central point is a compelling one, and his thoughts about why some specialties are better equipped for the long-term, rigorous studies that make such refinement possible make a lot of sense.

As someone with multiple conditions of varying degrees of severity and treatment options, I find myself in an interesting position within this debate. When I was diagnosed with PCD and bronchiectasis a few years ago, my treatment regimen changed in many ways. While I had pretty much lived on steroids and all kinds of inhalers for most of my life (and spending weeks each year in the hospital and getting worse with each trip shows how well that worked out for me), I switched over to a system of rotating strong antibiotics. I still use inhalers and my nebulizer, but the steroids are no longer the first line of treatment. I also started daily chest physiotherapy, and that has made such a difference in my quality of life.

I mention all this because for me, some of the biggest improvements in my quality of life, and even my survival, are tried and true therapies. (This isn’t to say that some of my antibiotics aren’t newer generation, or that the vest I use when I can’t get chest PT isn’t a more modern version of the very physical and visceral pounding I get from my therapist, obviously.)

These things were already in existence and working well in some populations—but if it weren’t for advanced technology and research, I wouldn’t have known to use them because I wouldn’t have been able to get the correct diagnosis for such a rare condition. Without research and innovation, I’d still be chafing under the wrong diagnosis, living between hospitalizations, and causing yet more irreversible damage to my lungs.

(You can probably see now why the research I learned about the other night was so exhilarating, yes? Hope is an equal-opportunity phenomenon.)

So while my daily life involves many old-school techniques, my improved quality of life and my existence as a PCD patient speaks very much to new-school capabilities. It’s a collaboration between what we already know works for similar patients and what we’re beginning to understand about how specific cells and structures function—and based on what I learned the other night, it’s a collaboration that also stretches across all sorts of specialties and boundaries.

Clearly I can’t say if so many of us will ever have a cure for what ails us, but the more innovation and collaboration we have, the more we can refine treatments and understand the origins of our disease and target specific pathways, connections, and cells, the better. As the Slate article points out, it must be done in the appropriate way, and as recent events have shown me, when this happens, it’s a great thing.

Thursday, June 12, 2008

I had an interesting conversation with a friend the other day about painkillers and the issue of control—namely, how painkillers rendered her too out of it to make decisions or know what she was saying or doing.

Not exactly the best feeling in the world.

I nodded, her words reminding me of all the times I’ve come out of anesthesia after surgery. For me, those initial waking moments when I can’t focus my eyes, can’t see without my glasses, and can’t make the words swimming in my brain come out of my mouth in any logical way, are the epitome of loss of control.

But injuries and surgeries aside, the issue of control is obviously so closely linked to living with any kind of chronic illness. Sure there are things we can do every day to manage conditions and there are preventative steps we can take, but when push comes to shove, so much is not up to us: whether we’re born with genetic conditions, whether autoimmune or other diseases sneak up when we’ve been otherwise, whether diseases we’ve done everything to manage progress anyway.

In the past, my quest to impose order on the chaos that was my medical existence pushed me to extremes. I wanted to do everything, to do everything perfectly, and to be in charge of all the details.

Clearly life doesn’t work that way, healthy or sick. It just took me about two decades to figure that out.

But of course, maintaining a sense of control is still a part of daily life. It isn’t as defining a characteristic as it used to be, but it’s there. None of this is breaking news, obviously, but I did take a fresh look at all of this when someone recently made the connection between writing and control.

My whole life I’ve always considered work, in whatever age-appropriate form it took, to be the antidote to medically-induced chaos. Meeting a deadline no matter what condition I was in meant I still exerted authority over illness. Still having responsibilities and roles meant I was something other than just a sick person—I’m sure many of you can relate to that, regardless of disease or profession.

Now that I’m an adult, now that I’m a writer, writing is my work. But it’s also a healthier way of controlling things that goes beyond the fact that it is my livelihood—no matter what state my body is in, no matter if I can’t sit up to type or I am supposed to be somewhere else, I can still write. I can still control a fundamental aspect of who I am.

Thursday, June 05, 2008

Actually, it was more than just passing interest I felt. It was similar to when I read that Anheuser-Busch launched Redbridge, a gluten-free beer: relief. After all, if a mainstream beer company embraced the needs of the gluten-free consumer, didn’t that mean others would soon follow suit?

So when I read that the CDC released studies “that linked the condition to genetic mutations and abnormalities in gene expression involved in key physiological processes,” it buoyed me a bit. When I read that “some cases of the syndrome were caused when an acute infection set off a recurrence of latent infections of Epstein Barr virus and HHV-6, two pathogens that most people are exposed to in childhood,” I was intrigued.

Decades have passed since chronic fatigue was dismissed as “yuppie flu”—decades marked by residual skepticism and dismissal nonetheless—and understanding the biological origins of the condition has always been paramount in allaying these dismissals.

I don’t write about it often, but my personal history with chronic fatigue began when I was in high school and a case of mono felled me. For nineteen months. Nineteen months of fatigue that overwhelmed me (at first, I slept twenty hours a day); of pain in my neck and joints so severe I cried; of fevers and infections and a brain haze so profound I found it hard sometimes to type my name.

Eventually, doctors gave this siege a name: chronic fatigue, and the flare that began my junior year in high school lasted for several years. I know how fortunate I was to have doctors who identified and diagnosed it so quickly; sadly, this is not often the case, even ten years later.

My condition improved somewhat after those first few months, but it definitely changed things. I didn’t have the same stamina; more than that, I didn’t have the same faith or reliance in my own body.

A decade later, its presence still insets itself in my life, though I’ve been lucky in that I haven’t again had a flare like the one that swallowed up four years of my life. When it happens, I don’t always know the source of the deep fatigue, the brain fog that comes over me sometimes that makes my sentences clumsy and my muscles burn and ache: Residual effects of steroids? Not getting enough air? Lingering complications from adrenal insufficiency? Or chronic fatigue?

I tell myself sourcing these moments isn’t important; dealing with them and moving forward with everything I need to do is what counts. And I believe that. But I remember how bad it was when it was really bad, when chronic fatigue was life halting, not merely life altering—and I know there are so many people still in that life-halted state.

Which is why the news in this updated article—particularly given the fractious history that exists with the CDC in relation to chronic fatigue—is so important. Some highlights? Research using strong antiviral medications shows promise, and it’s an avenue that opens up options beyond population-based studies, which some advocates and patients fault.

Click on over to the link above and read the rest—see how far things have come along, and how much work there is to be done.